Myelodysplastic Syndrome - Robin Roberts...now I'm feeling nervous

jml · 06-11-2012, 02:40 PM

Hi Friends~
You may have caught the last segment on Good Morning America this morning when Robin Roberts, who was diagnosed and treated for early stage BC 5 years ago(she did have chemo) revealed today that she has Myelodysplastic Syndrome, a bone marrow disorder that some researchers believe could be a precursor to Acute Myeloid Luekemia. She's scheduled for a bone marrow transplant later this Fall and her sister will be her donor.
Here's a link to the article:
http://www.latimes.com/news/science/sciencenow/la-sci-sn-robin-roberts-myelodysplastic-20120611,0,375744.story

Now I'm freaked out beause I've been struggling with "low counts" for a number of months now. And as of today, this is my third week "chemo break" from qd oral Cytoxan & bid methotrexate because my counts have not bounced back - in spite of 2 transfusions only 5 weeks apart. I've been chronically anemic (Hgb hovering in/below 10)and severely neutropenic since starting Halaven last August. In spite of switching to the oral CM combo, my counts haven't really made an impressive rebound.
And as the article states, "Symptoms are often not apparent, but can include shortness of breath, weakness or tiredness, pale skin, easy bruising and bleeding, and fever or frequent infections." I've been living with those symptoms for many, many months now. Some days are better than others, but for the most part I just don't have the energy and physical motivation that I used to.
I know there are specific criteria that only my doctor can look at to help distinguish chronic anemia from MDS, but this is something I've feared. Thus far I've just been saying, "My poor bone marrow is just so fatigued after 10years & 250+ rounds of chemo..."
But then considering Robin Roberts probably had standard therapy (6-8 cycles of chemo), I guess the susceptiblity to developing MDS is not dose related?

I am officially freaked out and and resisting the urge to fire off a panicky email to my Onc. But I will see her on Thursday and will get Vitamin H and I think I can hold out until then.

If anyone has any thoughts our experience with MDS, please share?

Keep the Faith~

Jessica

Jackie07 · 06-11-2012, 04:23 PM

Jessica,

Thank you for bringing this to our attention. According to the abstract I located through PubMed, older males and people who have been through cytotoxic therapy are at risk. So we all need to pay attention to the symptoms ...

Am J Hematol. 2011 Jun;86(6):490-8. doi: 10.1002/ajh.22047.
Myelodysplastic syndromes: 2011 update on diagnosis, risk-stratification, and management.

Garcia-Manero G.
Source

Department of Leukemia, University of Texas MD Anderson Cancer Center, Houston, Texas 77030, USA. ggarciam@mdanderson.org

Abstract

DISEASE OVERVIEW: The myelodysplastic (MDS) are a very heterogeneous group of myeloid disorders characterized by peripheral blood cytopenias and increased risk of transformation to acute myelogenous leukemia (AML). MDS occurs more frequently in older male and in individuals with prior exposure to cytotoxic therapy.

DIAGNOSIS: Diagnosis of MDS is based on morphological evidence of dysplasia upon visual examination of a bone marrow aspirate and biopsy. Information obtained from additional studies such as karyotype, flow cytometry, or molecular genetics is complementary but not diagnostic.

RISK-STRATIFICATION: Prognosis of patients with MDS can be calculated using a number of scoring systems. In general, all these scoring systems include analysis of peripheral cytopenias, percentage of blasts in the bone marrow, and cytogenetic characteristics. The most commonly used system is the International Prognostic Scoring System. This score divides patients into a lower risk subset (low and intermediate-1) and a higher risk subset (int-2 and high). Other more modern systems have been developed that allow more precise risk calculation.

RISK-ADAPTED THERAPY: Therapy is selected based on risk, transfusion needs, percent of bone marrow blasts and more recently cytogenetic profile. Goals of therapy are different in lower risk patients than in higher risk. In lower risk, the goal is to decrease transfusion needs and transformation to higher risk disease or AML. In higher risk, the goal is to prolong survival. Current available therapies include growth factor support, lenalidomide, hypomethylating agents, intensive chemotherapy, and allogeneic stem cell transplantation. The use of lenalidomide has significant clinical activity in patients with lower risk disease, anemia, and a chromosome 5 alteration. 5-azacitidine and decitabine have activity in higher risk MDS. 5-azacitidine has been shown to improve survival in higher risk MDS. Additional supportive care measures may include the use of prophylactic antibiotics and iron chelation.

MANAGEMENT OF PROGRESSIVE OR REFRACTORY DISEASE: At the present time, there are no approved interventions for patients with progressive or refractory disease particularly after hypomethylating based therapy. Options include cytarabine-based therapy, transplantation, and participation on a clinical trial.

Copyright © 2011 Wiley-Liss, Inc.

Laurel · 06-11-2012, 06:29 PM

Well, Jessica, I'd be a liar if I did not say my heart is beating pretty fast on this one. In general it is a risk we chemo crowd know is "out there" in the stratosphere, but really, how often do we hear of anyone facing it? Yet here is Robin Roberts, whom I frequently catch in the mornings and am fond of as a fellow survivor, facing this hurdle. I was thinking just last week that her being Triple Neg and 5 years out means she has essentially beat the beast. Three cheers for her! Well. What did I know. Now I fall back and do what I did when I first heard of her diagnosis...I'll pray for her.....And that is what I am prepared to do for you.

Jessica, I can feel the fear behind your urgent post. It is nearly palpable and I do not blame you one bit. Still, 10 years of chemo is enough to weary your marrow and it CAN be just that--marrow that needs a protracted break to stabilize. Remember in this cancer terrain we traverse HOPE is our lifeline, our one indulgence that allows us to cope, to hold on, to fight. I want you to hope, to believe you are not being given yet another obstacle to clamber over. This is not your cup to drink is my feeling.

I hope this spurs you to HOPE in your future! I will be watching to see what your Onc has to say on Thursday, please post an update.

Laurel

Hopbird · 06-11-2012, 07:41 PM

I'd stay with the fact that your body just gets tired until you've heard differently. I remember earlier in treatment there were things that could cause subsequent cancer, but when you're just trying to get through the next year or two anything further out just can't be as urgent....

Robin's news is sad...sorry for us..and sorry for her. Who wants to deal with that now too!

By the way...somebody (and it may have been you) had at one time posted about Emory and specifically Dr. Crocker for brain mets. I'm interested in comparing notes with this person as I see that doc as well.. Now if I could find them...don't remember why it wasn't what I thought was a good idea when they posted!

'lizbeth · 06-11-2012, 07:42 PM

I was reading that she had early breast cancer, yet still did 8 treatments of chemo that took 4 hours to infuse. 5 years ago, I would guess ACT, but that is just a guess.

I'm at 4 1/2 years out from TH and feeling a little nervous myself.

I hope that your counts are better soon jml, wow, 250 treatments - you are amazing and strong.

I hope your oncologist can sort through everything and ease your mind.

gdpawel · 06-11-2012, 08:45 PM

Myelodysplastic syndrome (MDS) is characterized by an excess of blasts in the bone marrow 5-20%. They become dysfunctional. The early stem cells don't make enough red cell, white cells and platelets. You don't have to receive chemotherapy and/or radiation to get this disease. Simple aging is enough. Most patients with MDS who have not received anti-cancer treatment are in their 70's and 80's.

While you may avoid the thought of leukemia when reading information on the internet, the only difference between MDS and leukemia is that the term "leukemia" is only used when the number of blasts reaches 20% or more. This is not all negative. A person with a 5q- deletion may take Revlimid and live quite a long time with no transfusions.

However, treatment-related MDS or secondary MDS is often more severe and difficult to treat than de novo MDS (unknown changes to the bone marrow). When people die from this, it is usually because they can't make enough infection fighting cells and get overwhelming infections such as pneumonia. Or they develop acute leukemia. This type of leukemia that develops in people with MDS is virtually untreatable (different from other kinds of leukemia).

For younger patients, the best hope is a stem cell transplant from someone else's bone marrow. But aside from transplant, there are no magic bullets. This is a bad disease that affect mainly older people and those that have received anti-cancer treatment.

I wish her luck!

http://cancerfocus.org/forum/showthread.php?t=281
http://www.cancerfocus.org/mds/myelo...e_basics_i/299

Ellie F · 06-12-2012, 09:35 AM

Hi Jessica
I think your first instinct about tired bone marrow holds a lot of truth. Having years of toxic treatment has got to take its toll.
I have struggled with platelet counts since being on long term herceptin following taxotere. My onc ordered a bone marrow to exclude this syndrome amongst other problem. There are many causes of bone marrow problems that are not as scary as this and hopefully yours will be one of them.
Don't forget the value of good nutrition especially micronutrient content in supporting blood formation. I have to constantly remind myself that now its not just for blood but for my osteoporotic bones!
Ellie

NEDenise · 06-12-2012, 03:36 PM

Jessica,
Just wanted to add my voice to the chorus af reassurance and good wishes. Your body is tired...geez whose wouldn't be, after all you've been through lately. I agree with Laurel...don't even let your weary mind go there, until after you've spoken with your doctor. If it is MDS...and I too DON'T think that it is...there will be plenty of time to "freak out" then. Right now, be kind to our friend, Jessica...Try not to borrow trouble by worrying about something that isn't there, and may never happen.

I'll be praying for you...and sending warm thoughts for your peace of mind.

Denise

chrisy · 06-12-2012, 06:13 PM

I'm with denise.

CoolBreeze · 06-12-2012, 06:33 PM

Yes, Denise is right. Who isn't tired after doing chemo for years? I know I am, I have every symptom that is mentioned too and it takes me a long time to recover when I get a chemo break too. But what happened to this news lady is very rare. Please don't spend time worrying about symptoms that are perfectly normal for what you've been through.

I know it's nerve-wracking - we are the ones who know bad things can happen so it's harder for us to ignore. Keep in mind, this is a television personality - her job is to be relatable so I bet people all over the country are worried right now because they identify with her. Talk to your doctor when you see him next so he can allay your fears but I think you'll be okay. Big hugs to you!

hutchibk · 06-12-2012, 10:38 PM

First things first. You have to go for a bone marrow biopsy first. I have had all of these things recently (except for low whites), and was worried that I had become refractory to platelets (since I have had several transfusions ordered by my neurosurgeon after brain surgery) and that my bone marrow was going to show something terrible (like Robin Roberts has) because I had been so heavily pretreated. 1) my hemoglobin had fallen to 7.4 from the upper 9s/10, so I had a transfusion. 2) I had several platelet transfusions this winter/spring so my platelets would stay at a constant 90-100 level while my cerebellar surgery site healed and clotted. I thought I was becoming refractory (meaning you don't go 'up' any more on platelets on your own, just down down down). 3) I was afraid that I had either another cancer or a bone marrow/blood disorder due to all we had to do, plus a clinical trial, and being heavily pretreated, so we did a bone marrow biopsy at the behest of my onc, who also wanted an answer.

It turns out that 1) hemoglobin hovers around 9.5-10.5ish for me these days, but we keep a close eye on it. Today it was 9.6, and I am a little fatigued. It will probably go up, it always seems to. It controls a lot of things... 2) platelets are now at a steady 70, but we like them to be 75-80 minimum. Today they were at 60. Ouch. And I have a bruise (blown vein) to prove it... But I am not refractory, as they go down and then up and then down and then up, due to TDM1. 3) I did a bone marrow biopsy about a month ago, and it turned out that I just produced fewer cells than most others, possibly caused by all the chemo, but that was all. No cancer or blood disorders.

So it can just be coincidence. Please don't get yourself in a lather until you have a bone marrow biopsy. It's not as bad as it sounds (and I was askeered). That is the way to truly know.

jml · 06-13-2012, 11:59 AM

Thank you everyone for your reassurance and compassion, and Brenda, for sharing your detailed 1st hand experience.
Another friend who is a pathologist & head of the blood bank at the cancer center where I'm treated (whenever I need a transfusion she makes sure I get "good blood" = 1 donor, preferably young!) helped put things in perspective also.
She pointed out that I have only been on this chemo break for 3 weeks, after 10 years of treatment, the past 3.5 being almost continuous, so that's not nearly enough time to jump to the conclusion of MDS or even warrant a bone biopsy asap.
In contrast, Robin Roberts completed her treatment ~5 yrs ago and her bone marrow still doesn't recover, and that truly chronic state would be reason to search for the cause.
Clearly the syndrome isn't dose related which confuses me; I wonder if it's drug type related?
Per your suggestions, I'll just tuck my fears away and focus on fighting the good fight, albeit a little more lethargically these days.
Brenda - my Hgb also hovers in the 9-10's, but has dipped as low as 6.4 a couple of years ago. The past 2 times I got whole blood my Hgb had dropped to 7.3, and then 5 weeks later, 8. I miss having that extra pep in my step and always feel like I could use a triple shot of espresso to really get the day going.
My platelets have been as low as 30, but are now steady in the 80's. Honestly, I'm a little shocked that I don't catch all the different bugs that I hear others suffering from, but I do think being neutropenic makes me feel crummy.
I get labs & Vitamin H tomorrow and am crossing my fingers that my counts have come up enough to resume the Cytoxan & Methotrexate. Scans are coming up and I don't want to go untreated much longer.
Too nervous.

Thanks again friends!

Keep the Faith~

Jessica

Pray · 06-13-2012, 12:50 PM

Once again you rock Jessica! Gods blessings to you. You are always in my prayers.

hutchibk · 06-13-2012, 08:17 PM

If any of you decide you need a bone marrow biopsy, here's what I went through. I was scared, because you are told to be scared of bone marrow biopsies. But no more!

I had a bone marrow biopsy a month ago. I was on my stomach in a comfortable position (The longest time is getting comfortable on your stomach on the CT table, and then the CT itself to be sure they biopsy just the right spot). I was put under for 11 minutes total (Versed and Dilauded, very very small dose). The taking of the bone marrow is not supposed to be painful. You should be "out" for the 10-12 minutes it takes to get the biopsy. I was apprised of everything that would happen, and I felt nothing until the next day when I bruised in that area (near the coccyx). They tell you that it will be sore in that spot for 4-7 days after, each day getting better. For me it was 7 days, but it felt like a coccyx bruise (like when I fell down skiing years ago) more than anything else. They give you ideas how to sit on couch and in car to make sure it doesn't end up too sore at any given position. It kept getting better everyday. My Oncs used to perform bone marrow biopsies, but not anymore... I had the head of the radiology dept at the hospital do the procedure. I would absolutely do it again. I had been getting non-stop chemo with no breaks since 2005. I also take Espsom Salt baths every 3 days or nights and it apparently takes all the toxins out of the body, so I am sure that helps, too.

1rarebird · 06-14-2012, 06:06 PM

According to the abstract I located through PubMed, older males and people who have been through cytotoxic therapy are at risk. So we all need to pay attention to the symptoms ...

Cheezz--that's a double whammy for me! It might explain why my platelets numbers are starting to drop. This forum never ceases to amaze me and irk my onc. when I bring him another question I first heard about here. But I'd rather hear about here than not at all.--bird

Pray · 06-14-2012, 10:10 PM

Before cancer I never had low white counts, since I was dx I have had low white cells through out treatment and still have low white cell counts. Is anyone else haveing this problem?

A year after treatment my onc. was worried about it and I had a bone biopsey and everything checked out ok. Should I be worried if this goes on further? It has been two and 1/2 yrs.

Jackie07 · 06-15-2012, 01:46 PM

This just in (from Breastcancer.org):

http://community.breastcancer.org/bl...stic-syndrome/

Laurel · 06-15-2012, 07:20 PM

That was interesting and informative. Thanks, Jackie!

alicem · 06-23-2012, 09:02 AM

Hi Jessica,

Just checking in to see how you are doing. We haven't heard from you since you've had your last appointment. I hope you got good news from your doctor and were able to resume treatment.

Love, Alice

jml · 06-23-2012, 03:31 PM

Hi Alice & All~
Good news! My ANC (total white count?) came up high enough for me to resume chemo last week. It felt weird to be happy to starting back on chemo, but I genuinely am.My Hgb is still hanging in there@ 10's & my neutrophils are still low. I was off a full 3 weeks off chemo and it took about 2 & half weeks to feel more energy, and so far, one week back on treatment feeling pretty good.

I have a brain MRI next Thursday, then a full body PET the following week. This will be my first brain MRI in 3.5 mos and the PET will be the 1st since starting Methotrexate/Cytoxan last January, yep 6 months ago. We had anecdotal evidence that it was working but didn't scan bc we knew we didn't have treatment options left. But now that Pertuzumab is on the market, we'll have at least one option to turn to, if needed. But keeping fingers crossed that Methotrexate/Cytoxan continue to work for a long, long time.

Thanks for checking one me~
Always keeping the faith!

Jessica